Categoría: Historias

Crecer con la EH: ideas y estrategias de apoyo con Siri Hagen Kjølaas

En la Conferencia de EHDN y Enroll-HD celebrada el año pasado en Estrasburgo, tuvimos el privilegio de entrevistar a la doctora Siri Hagen Kjølaas para hablar de su innovadora investigación sobre los retos psicosociales a los que se enfrentan [...].

Vidas Habitables - un nuevo libro que recoge historias de personas afectadas por la EH en todo el mundo

PRESS RELEASE – October 25, 2024, Moscow, Idaho, USAWe are pleased to announce the launch of a new book about Huntington’s disease (HD) called, Livable Lives: Conversations with the Huntington’s […]

Crónica de una búsqueda implacable: La creación de una fundación

I belong to the third generation of a family affected by Huntington’s Disease, but it wasn’t until 2024, thanks to the tireless efforts of my second father, F. Cook, that […]

Existimos: Tanita Allen relata su lucha por acceder a las pruebas genéticas en Estados Unidos

In her memoir “We Exist”, Tanita Allen tells of the difficulty she had in having her symptoms correctly diagnosed as Huntington’s Disease. Time and again, she was misdiagnosed because doctors refused […]

Perspectivas de la comunidad EH: Conocimiento, empatía y aliento - La Conferencia de la EHA me inspiró

Almost exactly 18 months after my diagnosis of suffering from Huntington’s Disease, I embarked on the journey to the European Huntington Conference in Belgium. The days in Blankenberge became an […]